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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 10 Search Results for "Ninlaro"

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Darzalex

Darzalex

I am beginning treatment with Darzalex what have people experienced with this treatment? I had a Stem cell implant 18 yrs. ago and was in remission until now. Tried pomalyst and ninlaro with no sucess.
Dr.Stan

A MyMyelomaTeam Member said:

Yes i am on darz and ninlaro..my numbers got better but no to a stable number i told my dr
1 more blood test then something new I believe Ninlaro just isnt strong enough to kick it out..Pomalystread more

posted about 2 years ago

IgG And Kappa Light Chain Rising M Spike Stable

IgG And Kappa Light Chain Rising M Spike Stable

Is it common for a doctor to see that the kappa light chain is out of normal range and the IgG is raising and the M spike is stable? She’s keeping me on the same medication 4 mg of Ninlaro every Wednesday for three weeks and 21 days on 25 mg of Revlimid 4 mg of decamethazone on the Wednesdays that I take the in Ninlaeo?

I’m confused and perplexed.

A MyMyelomaTeam Member said:

That, I don't know but I can be sure that if you have. light chain myeloma they are goig to watch the light chains more closely.

posted 17 days ago

Has Anyone Been On Ninlaro After SCT?

Has Anyone Been On Ninlaro After SCT?

I’ve been taking Ninlaro for 1 year and my numbers are creeping up. My Dr said they are fluctuating. To me that means up and down.

If you’ve taken Ninlaro, Dex and Revlimid how long did it work for you?

She even said to me she believed that the Revlimid was keeping the numbers stable. Well apparently not.

I’m scared of new medicine that’s going to knock me on my butt again.

A MyMyelomaTeam Member said:

You might try Darzalex FasPro. It worked well for me during induction and I've read other posts that people have added it once their numbers increased and it helped them.

posted about 1 month ago

Revlimid

Revlimid

I’ve been on Revlimid for approximately 4 years with very good results thus far. I was diagnosed with MM 5 years ago and have NOT had a stem cell transplant. I’m just curious if other have also been on Revlimid without a transplant? If so, how long has it been. For those who were on Revlimid, and eventually needed a transplant, how long was the Revlimid effective? It’s my understanding at some point the drug will lose it’s effectiveness, and I will need to explore other available options… read more

A MyMyelomaTeam Member said:

I came down with MM last May 21st, 2021. I'm in remission as of 2 months ago and had my dose reduced from 25MG every day to 15MG for the 21 day cycle. I want nothing to do with Stem Cell… read more

edited, originally posted 2 months ago

EVUSHELD

EVUSHELD

Did anyone in the group receive EVUSHELD injection? How was your experience? Any adverse effects after the injection? I’d appreciate your comments/thoughts on this.

A MyMyelomaTeam Member said:

Thank you for sharing. I opted not to go for the booster dose as well bec after 2 doses of Moderna vaccine, I had generalized pain … my hips, lower back and shoulders where I experience minimal to no… read more

posted 4 months ago

Constipation

Constipation

I haven't seen this question asked or answered, and I'm sure I'm not the only one who has to deal with this. Is anyone dealing with constipation due to Revlimid, Ninlaro and Dex? Just wondering. thanks,

A MyMyelomaTeam Member said:

I'm on the same protocol. It seems to cause more neuropathy the longer I am on it. I get around okay. Just a little wobbly. The fatigue is rough though💪💜

posted 9 days ago

Does Anyone Have Belly Bloat?

Does Anyone Have Belly Bloat?

Does anyone have belly bloat? This last month it’s gotten worse. Also I’ve been waking up to throwing up just water though. Not nauseous just waking up to it. Last night was bad. Threw out my pillow and had to shower at 3am. 🤷‍♀️😞

A MyMyelomaTeam Member said:

Yup, I also have belly bloat but I thought I was just getting fat. It is so very frustrating so I am going to a dietician to find out what I can do to combat this.

posted about 2 months ago

Is There An Alternative Drug To Velcade?

Is There An Alternative Drug To Velcade?

Is there an alternative drug to Velcade that doesn't cause neuropathy? I have been on it for only four months and starting to get tingling in hands and feet. Is this reversible? Has anyone experienced this and when did you get off the drug?

A MyMyelomaTeam Member said:

Great!
Where did you find the Topricin Foot cream?

posted 13 days ago

I'm On Revlimid, Ninlaro And Dex, With Once A Month Infusion Of Zolendronic Acid

I'm On Revlimid, Ninlaro And Dex, With Once A Month Infusion Of Zolendronic Acid

Im fighting the fatigue that is almost ever present. Wondering if anyone is taking vitamins to combat the fatigue and do they work? B12, etc

A MyMyelomaTeam Member said:

I think b12 does help. I use a sublingual tablet. My mother swore by Geritol😄👍💜

posted 3 months ago